Parkinson’s Disease Community
Founded in 1957, the National Parkinson Foundation (NPF) has funded more than $189 million in research and support services to improve the lives of people with Parkinson’s. It continue to be a major funder of research programs, such as their Quality Improvement Initiative, part of the Parkinson’s Outcomes Project, designed to change the course of the disease.
NPF Centers of Excellence , at top medical institutes, comprise the first international network to focus on how to improve care delivered to Parkinson’s patients. The network includes 41 Centers of Excellence that deliver care to more than 50,000 Parkinson’s patients.
NPF chapters , throughout the United States, provide access to local resources and services, such as support groups, exercise and wellness classes, education programs and more.
NPF Programs touch more than one million people a year through the NPF’s U.S. chapters, support groups and their online resource, Parkinson.org.
NPF helps people with Parkinson’s every day through their popular “Ask the Doctor” online forum, their series of free educational manuals that are distributed to patients and families around the world and through their national Helpline, 1-800-4PD-INFO (473-4636).
Many of today’s leading scientists in the field of PD research received their initial funding through a NPF grant. Among the accomplishments of NPF-supported research:
l Genetic research that led to discovery of the importance of the alpha-synuclein gene in PD.
l Research that led to the identification of novel pathways in the basal ganglia that are now targets for drug development efforts.
NPF has trained more than 1600 medical and health care professionals in “best practices” for Parkinson’s patient care through our signature professional training initiative, Allied Team Training for Parkinson (ATTP). ATTP prepares allied health care professionals to deliver integrated specialized care in a team setting to individuals with PD.
APDA chapters active in 34 states engage in fund raising for research and awareness; local outreach, programs and education symposia; newsletters; advocacy for those afflicted with PD through local organizations.
APDA Information and Referral Centers respond to the particular needs of persons affected by Parkinson’s disease and their care partners through education, referral, support and public awareness programs. The Information and Referral Center serves as a regional “hub” which processes requests received by mail, phone or on-site visit.
The APDA also maintains a National Young Onset Center website.
PDF’s mission is to find a cure for Parkinson’s disease, by supporting medical and scientific research of the highest caliber; and to provide support, information and education for those patients and families who suffer with the condition. PDF aims to empower the PD community–people with Parkinson’s act as research advocates, identifying issues and convening experts to find solutions. The PDF and the NPF merged in 2016.
The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson’s disease through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson’s today. It operates the Fox TrialFinder program, bringing together PD patients and researchers seeking participants for clinical trials.
The Parkinson’s Action Network, education and advocacy voice of the Parkinson’s community, was integrated into the MJFF in 2016. Through education and interaction with the Parkinson’s community, scientists, policy and opinion leaders, as well as the public at large, MJFF advocates for an increased and accelerated investment of public resources to find a cure for the more than 1 million Americans who have Parkinson’s disease.
Wilkins Parkinson’s Foundation (WPF) is dedicated to accelerating the cure and treatment of Parkinson’s Disease. Based in Roswell, Georgia, their strategies include directing funds to research, education and awareness, working to increase collaboration between other PD nonprofits, and advocating on behalf of the entire Parkinson’s community. Since WPF held its first annual Polo for Parkinson’s event in 2008, they’ve raised almost half a million dollars for the Michael J. Fox Foundation (as WMC Team Fox), and assisted other PD charities like the American Parkinson’s Disease Association and Parkinson’s Unity Walk with awareness and fundraising projects.
The Foundation provides essential information, practical tools and inspiration to people living with Parkinson’s and funds research closely aligned with their mission – improving the lives of people living with Parkinson’s.
The Victory Summit® symposia series brings together as many as 1,000 people in local communities for a day of inspiration and learning. Including presentations by internationally and nationally recognized researchers, clinicians, and physical therapists, The Victory Summit symposia deliver up-to-date information and practical tools that people with Parkinson’s can use to live well today. Participation in The Victory Summit is free, and the events are open to all members of the Parkinson’s community.
Every Victory Counts® program, a manual and essential guide for living well with Parkinson’s. Unique in the world of Parkinson’s resources, the Every Victory Counts program informs and inspires people living with the disease – including caregivers and family members – to take control of their own Parkinson’s treatment through proactive self-care.
The Living Well Challenge™ is a free, educational webinar series featuring movement disorder experts speaking on topics of interest to people affected by Parkinson’s disease.
Recent funding of a trial exploring the benefits of stationary cycling and the potential of forced intensity exercise to slow disease progression has been provided to Dr Jay Albers of Clevelend Clinic and Dr. Bas Bloem of UMC St, Radboud, Nijmegen, the Netherlands.
The National Institute of Neurological Disorders and Stroke (NINDS) conducts PD research in laboratories at the National Institutes of Health (NIH) and also supports additional research through grants to major medical institutions across the country. Current research programs funded by the NINDS are using animal models to study how the disease progresses and to develop new drug therapies. Scientists looking for the cause of PD continue to search for possible environmental factors, such as toxins, that may trigger the disorder, and study genetic factors to determine how defective genes play a role. Other scientists are working to develop new protective drugs that can delay, prevent, or reverse the disease.
In fiscal year 2012, the NINDS funded approximately $98 million out of a total of $154 million in NIH-supported PD research. The NINDS supports basic, translational and clinical research programs through a variety of mechanisms, including the Morris K. Udall Centers of Excellence for Parkinson’s Disease Research and the Parkinson’s Disease Biomarkers Program (PDBP).
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There are many other organizations serving the PD community, including the Parkinson’s Alliance, The National Unity Walk, Movers & Shakers, We Move, the Parkinson’s Resource Organization, and P.A.N.D.A.